Prior to COVID-19, communication via the internet was already a regular feature of everyday interactions for most people, including those on the autism spectrum. Various studies have shown how autistic people use information and communication technology (ICT) since the early 2000s, some finding that autistic people may prefer to communicate using the internet instead of in-person. However, no systematic review has been conducted to summarize these findings.
To understand what has been discovered so far, researchers from Drexel University's A.J. Drexel Autism Institute collected and reviewed published research about how autistic youth and adults use the internet to communicate and provide a framework for understanding contributions, gaps and opportunities in online autistic communities.
Lead author Elizabeth McGhee Hassrick, PhD, an assistant professor in the Autism Institute, and her co-authors cast a wide net searching across five databases that list studies investigating how autistic people use the internet to communicate. Filtering for specific criteria, they read 32 articles, collected their most important findings and looked for patterns.
Of those 32 studies, 19 used closed-ended survey questions, 12 studies used open ended interviews and looked for patterns and connections among participants and one was a mixed methods study. In total, 3,026 autistic youth ages 10-17 and adults participated in the studies they reviewed.
Three main themes emerged from the review: differences in the ways that autistic youth and adults used the internet to communicate, benefits and drawbacks experienced during internet communication and the engagement of autistic youth and adults in the online autism community.
The review found some of the benefits of social media for autistic people include more control over how they talk and engage with others online and a greater sense of calm during interactions. Social media provides opportunities for autistic people to find others on the autism spectrum and form a stronger identity as part of the autism community. However, findings also suggest that some autistic people continue to be lonely and desire in-person relationships despite cultivating social media friendships.
"Further exploration of the positive social benefits that autistic people gain participating in online autism communities would allow for the development of strengths-based interventions," said McGhee Hassrick. "For example, additional research on how autistic people navigate sexuality and ICTs is needed to identify ways for reducing vulnerability online."
McGhee Hassrick added that this study can help identify gaps and opportunities for new research, support the importance of online autistic communities and suggest possible training opportunities about how to support autistic people when they use the internet for communication.
"We learned that the evidence base is emerging, meaning that more rigorous, high-quality studies are needed," said McGhee Hassrick. "Also, many autistic people were underrepresented in the study. There is little research about autistic women, autistic transgender people, autistic racial/ethnic minorities or autistic people from lower socioeconomic groups."
The study, "Benefits and Risks: A Systematic Review of Information and Communication Technology Use by Autistic People," was recently published in Autism in Adulthood. Co-authors include Laura Graham Holmes, PhD, of CUNY Hunter College; Jessica Walton of Drexel University; Collette Sosnowy, PhD, of Brown University; and Kathleen Carley, PhD, of Carnegie Mellon University.